Follow up with Ontario’s Ministry of Children And Youth Services on Autism Services

I’ve received a follow up from the Ministry of Children and Youth Services in Ontario regarding my son’s position (who is severely non-verbal autistic) after insisting on it regarding what we were told during the last conversation. What I received back looked like a canned response. So here it is in full. I’ll dissect the response.

Dear Mr. Koblovsky:

Thank you for your email regarding autism services for your son. I appreciate the opportunity to respond and provide you with some information.

With a canned pre-made template but okay I’ll listen.

The new Ontario Autism Program, which will begin in June 2017, will deliver individualized autism treatment that provides the intensity and flexibility of service to meet the individual needs of each child, regardless of his or her age.

As of April 1, 2016, children five and over are no longer eligible to apply for IBI. These children can apply for ABA services and receive ABA when a space becomes available. The ministry is increasing the number of spaces available in ABA beginning this year, and doubling the maximum intensity available for each child in 2017. These changes mean that more children who are waiting for ABA will receive services sooner, they will receive more service, and for longer than they would have before these changes.

What’s being said here is that my son who is 11 is no longer eligible to apply for intensive therapy. The only therapy that is available for him is the ABA program. That program only allows for 1 hour per week slots, and most of it is training the parents on ABA rather than observing the child. The ministry is indicating it will “up” the program here to 2 hours per week? Still not effective, not even close to being enough. It’s a waste of money across the board. This amount of therapy from our experience as well as many others hasn’t produced any successes I am aware of in its history.

The wait time for this ineffective therapy is 1 1/2 years! This is being used as “transitional” services by the ministry for kids who are over the age of 5. Those that apply now for these services will not receive support until well after the new program takes place. The government promised that all kids affected by this transition to the new program would receive intensive therapy no matter the age until the new program is in place. Many parents were given upwards of $10K to purchase those supports, until the new program has been rolled out. That doesn’t seem to be the case for my son, largely due to his age.

Beginning in 2017, children of all ages will be eligible to apply to the new program, and will receive more flexible and individualized services based on their needs. There will also be a single access point for autism services in each region, so that families do not have to apply to two separate programs.

It better not be Kinark! What this is saying to me, is parents will not be eligible to apply for the new program until it is rolled out. Meaning there is no plan to have a wait list right now for that program. Those who were on the IBI wait list prior to April 1st, 2016 will keep their spot from what I understand, and those not on the wait list will have to wait for the new program in order to even get on this wait list and will be at the bottom of the barrel. It is unclear from this whether those who are on the ineffective ABA wait list will have their spot in line transferred to the new program, or will this be an automatic transition with priority given to those who were on the wait list prior to April 1st, 2016 (most of which were the ones protesting at queens park), and our place in line determined in 2017.

I’m getting the feeling from the way this has all been set up, the “backtrack” was to make those who were the majority of the autism protests happy, and screw everyone else in the process.

Your email to Sharon Gabison from the Ontario Autism Coalition regarding your family’s situation was forwarded to your local ministry regional office. I understand the program supervisor contacted you to provide information on what services are currently available to your family. If you have any written documentation regarding your son’s past application to IBI, please contact Kinark or your ministry regional office.

I had previously stated that we had documentation from Kinark regarding our placement on the wait list for IBI. Turns out that it was actually for the ineffective ABA program. To date Kinark hasn’t sent anything to my family regarding putting my severely autistic son on the IBI wait list after repeated attempts to get them to do so. I am aware and have forwarded another case to the minister directly where this has happened to another eligible family as well. I have filed a ministerial complaint against Kinark, read the Ministry’s response and my open letter to Minister Coteau.

We know the transition to an improved autism program may be challenging for some families. Information is available online at http://www.ontario.ca/autism on how the changes may have an impact on your family while transitioning to the Ontario Autism Program. It includes the changes that will occur and the next steps a family can expect.

The problem with this statement is they used the word “challenging”. Parents of disabled kids have enough on our plates regarding “challenges”. This represents a lack of understanding and complete ignorance of the challenges we face as care givers on any given day. To add to these challenges intentionally is immoral, self serving, ignorant, and also representative of the fact that Kathleen Wynne was not listening to parents over the past few months that came to Queen’s Park looking for understanding from politicians on what we all have to go through on a day to day basis.

It seems to me, this “backtrack” on autism funding and age restrictions has been nothing more than smoke and mirrors, combined with an attempt to put lipstick on a pig.

If you have further questions or concerns about specific services in your community, you may find it helpful to contact Greg Ladyka, Program Supervisor, at 905-952-1907, or Brenda LeMoine, Community Program Manager, at 905-952-1901.

A very junior contact being provided to members of the Ontario Autism Coalition. Politically that states that autism services isn’t very high on the priority list anymore after the protests died out. In solidarity to the autism community on behalf of my son who has been waiting 6 1/2 years for intensive therapy: